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"This Case Is Closed"

Policies promoting home- and community-based services and disease management models implicitly rely on family care, still the bedrock of long-term and chronic care in the United States. For example, stroke patients discharged from hospitals, typically a week after the incident, require an enormous amount of care at home. Most are eligible for some services from home care agencies, but family caregivers shoulder three-quarters of the care responsibilities even when these services are delivered. And once these home care services end, typically after six or seven weeks, family members must take over or seek other sources of assistance.

A United Hospital Fund project, “This Case Is Closed,” examines how family caregivers of patients who suffer a stroke or traumatic brain injury manage when formal home care services are terminated.

The project has three main components:

• A prospective survey that followed caregivers up to one year after home care ended

• Focus groups with clinicians

• Focus groups with home care aides.

The results of these surveys and focus groups are now available through four published articles:

2. Published in August 2005 in (and generously made available for this Web site by) The Gerontologist, “Family Caregiver Research and the HIPAA Factor” examines the challenges facing researchers seeking to recruit caregivers as a result of strict protections of patient privacy mandated in the Health Insurance Portability and Accountability Act (HIPAA) of 1996.